Service Update – December 2013
Suffolk GP Federation Lymphoedema Service
Introduction
Lymphoedema is a chronic and progressive condition: it is frequently undiagnosed in patients with a cancer diagnosis and in patients who have suffered with long term symptoms for many years as a result of a missed diagnosis. Lymphoedema is characterised by chronic swelling caused by the accumulation of lymph in the soft tissues. It usually affects limbs and occasionally the quadrant of the body adjacent to a swollen limb. Genital oedema can affect both men and women alongside head and neck oedema seen as a result of trauma or cancer or cancer treatment. If not treated, Lymphoedema can result in many complications that can lead to hospital admission which long term, warrant a higher level of specialist intervention. Alongside the latter, both physical, psychological and quality of life issues have implications for the individual who has Lymphoedema.
This Service Update aims to outline the development of the Suffolk GP Federation Lymphoedema Service which has been operating since September2012.
Network Services and Strategy
Many government initiatives identify the need for physical and psychological interventions required for Lymphoedema management. The NHS Cancer Plan (2000) addresses inequality in service provision and proposed that all patients with a cancer diagnosis receive seamless accessibility to Lymphoedema care/management. The international Consensus Best Practice for the Management of Lymphoedema (BPFTMOL) (2006) has also allowed services and commissioners clear pathways and direction in effective identification of patients at risk of Lymphoedema.
Since the Suffolk GP Federation has been commissioned to provide the service (Any Qualified Provider (AQP) we have seen an increased number of referrals particularly in the last few months. The service is now seeing more complex patients in line with the specialist nature of the skills of all of the Practitioners providing assessment, treatment decisions and treatment pathways. Long term management options in line with workshops, psychosocial support, and exercise/movement and compression hosiery have been evaluated as a valuable resource in empowering patients to be become expert at managing a chronic lifelong condition.
Epidemiology
It is estimated that around 100,000 people in the United Kingdom suffer with Lymphoedema (Moffatt et al 2003).
Various services and organisations across the United Kingdom have carried epidemiological studies; this has identified Lymhoedema as a significant but unrecognised problem. As a result deficits in care and management of Lymphoedema have been identified with 36% of people receiving no treatment. Studies have also emphasised that treatment delivery has been and remains fragmented with patients not always being able to access specialist care/management.
Case of Need
The effectiveness of providing complex management for patients with both primary and secondary Lymphoedema has been measured using specific performance indicators within the service:
- Deliver specialist Lymphoedema management/care
- Plan and organise management of complex oedema
- Increased liaison and engagement of key Health Care Professionals
- Contribute and participate in developing the service in view of any research projects, or evidence base
- Demonstrate and participate in, and undertake any clinical audit or patient surveys
- The ability to respond and to change and take innovations to move ideas forward in order to improve service delivery
Working in collaboration with others
In line with the contractual agreement access to the service and specifically treatment is restricted to a set number of treatments. The increase within Individual Funding Requests has evolved due to the complex nature of the condition we are managing, and the pure chronic nature of this condition that demands lifelong management.
Despite the increased collaboration and education taking part across West Suffolk there remains very limited specialist knowledge to continue care/management of this chronic condition. In working in collaboration with other Lymphoedema Specialists within West Suffolk; Suffolk GP Federation have maintained and ensured that a clear defined pathway of care/management for all patients with Lymphoedema is accessible and practical to meet the demands of such a chronic condition locally has maintained a standardised treatment that is very clear and comprehensive as set out in the BPFTMOL. Comprehensive skills and training allows standards and protocols to be followed clinically in line with the management of Lymphoedema both locally and nationally.
It is here that our service maintains a comprehensiveclinical assessment proforma; identifying both the medical and lymphoedema assessment that are both paramount to the clinical diagnosis. International ‘Staging’alongside the five “S” scores (skin, shape, size, sub-cutaneous tissue and swelling) are indicative to the classification of severity and treatment decision.
As part of the assessment process, we consider other clinical criteria which fit into the process allowing a comprehensive treatment package unique to the individual patient’s needs. We work alongside the Multi-disciplinary team and refer to the appropriate Health Care Professional in order to gain the optimum treatment outcome for the patient holistically. We follow the clear management guidelines of Lymphoedema as set out in the BPFTMOL. How we address just treatment using Manual Lymphatic Drainage (MLD) and Simple Lymphatic Drainage (SLD) is addressed as to the psychological and symptomatic benefits and to the indications for use as set out in the BPFTMOL. There remains a wealth of clinical opinion supporting the use of MLD in treating patients however; there is little research data to conclusively support its use as a stand alone treatment. We teach SLD as part of the patient’s self-management along side the five cornerstones of self management (Skin, positioning, exercise, SLD & compression hosiery).
Modified treatments for long term or palliative use are usually outlined with an Individual Funding request due to the unique nature of the need for on-going treatment.
Our service evaluation and electronic data evidence proves excellent treatment outcomes and improvement in patients general wellbeing, improved quality of life and maintenance of a chronic condition.
Long term management
As part of this service update it is here that there is an unmet need and highlighted discrepancies that have been uncovered in discharging our patients into the community for on-going specialist management.
Our service provides treatment under the contract for what is described as an acute episode of management. In all of the evidence available there is no evidence to support an acute episode. Lymphoedema is chronic, debilitating and life long. Volume and shape can change rapidly due to many clinical issues however; the nature of the condition is damage to the lymphatic system that cannot be repaired.
Since the service has been up and running the evidence to support the current situation in discharge is that none of the GP localities nor District Nursing services have any clinical expertise that have the knowledge and skills to carry out complex measuring for compression hosiery and monitor total volume as way of changes in volume and shape. Therefore, we have no safe practice to discharge a patient into with no grounded Health Care Professional Skilled to the need across West Suffolk.
Specialist and higher levels of roles in managing Lymphoedema has been defined as a specialism due to the required complexity of knowledge and skills beyond that of a generalist practitioner. Agenda for Change reforms arose from the NHS Plan that looked at improving services and developing a skilled and flexible workforce. This reform allowed the NHS knowledge and skills Framework development. It is this unmet need that suggests defining a desired service that addresses this issue and by further investigation and consultation that essential securing and funding of a proposed service is commissioned to support this relevant area of need.
Making the case
Suffolk GP Federation understands the financial climate affecting services provided by the commissioning team. However, to fully address this issue we propose that by presenting a model of care that best meets the local care needs of patients with both primary and secondary Lymphoedema can fulfil this area at risk.
By underpinning this new service delivery/model of care focused on a key/link worker role then we propose a consultation and partnership that has a shared vision in developing service that will address this need. By providing you with the evidence and development proposal it is hoped that you will invite us to provide you with the appropriate data requested for consideration of a re-measuring/discharge tariff.
On-going Plans for 2014
As part of the National Awareness week in September 2013 we raised the profile of our service both locally and nationally as an AQP provider for West Suffolk. In 2014 we aim to achieve a greater influence on the community as well as all Health Care Professionals locally.
We aim to achieve setting up a patient support group that gives patients and their careers the external support that they need when managing such a chronic condition. We have seven steps that will take us forward in planning and setting up of this group which is planned for the second quarter of 2014.
Conclusion
This paper highlights the need to expand the lack of service provision for discharged patients with both primary and secondary Lymphoedema allowing an improved cohesive package of care under the umbrella of specialist lymphoedema practitioners.
Allowing this proposal to go-ahead provides equal access to specialist management there by discharging patients into a safe co-ordinated practitioner that has specialist skills, knowledge and experience.
Through consultation we hope to achieve the full potential of our service taking a lead position in providing this gap in patient services locally.
For further discussion I’m happy to answer any clinical queries. Please contact me on my mobile number: 07739 326069.
Diane Cheevers
Lead Lymphoedema Nurse Specialist.
Suffolk GP Federation
December 2013
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